Norway: Personal Assistance heading for legislation?

Interview with Jan Andersen, Lillehammar University College, Norway on November 17, 2011

Norway is discussing whether or not to pass legislation about user-controlled personal assistance. Researcher Jan Andersen at Lillehammer University College, who has conducted research on user-controlled personal assistance since its inception, sees problems because legislation would only apply to users with more than 20 hours/week. He also comments on the changing assistance market, with the entrance of private companies and municipalities contracting out assistance to keep costs down.

2,300 users have an average of 33 hours/week

Personal assistance in Norway began in 1990 with a pilot project run by the Norwegian Association of the Disabled. This pilot project later became today’s largest assistance cooperative in Norway, ULOBA. On May 1, 2000, user-controlled personal assistance was implemented in the Norwegian Social Services Act 4-2 and 8-4 for people with extensive, permanent disabilities who can be supervisors for their assistants. In 2006, user-controlled personal assistance was expanded to include people who cannot act as supervisors of their personal assistants.

The number of personal assistance users has increased from 600 in 2002 to 2,300 in 2010. The number of assistance hours/person/week increased from 16 to 36 in 2002, after which it declined to 33 hours in 2010. Jan Andersen has monitored user-controlled personal assistance since its inception and is co-author of the report Stability and change - Development of user-controlled personal assistance. “The cost driver of the system is not primarily the number of assistance hours, but the dramatic increase in the number of users. The number of assistance hours appears to have declined in recent years because fewer hours were approved for more people. The municipalities may have become more restrictive, or those people who received user-controlled personal assistance first may have had the greatest need.

Differences and similarities with Sweden

There are a number of differences between the Assistance Benefit in Sweden and user-controlled personal assistance in Norway. Sweden has legislation in the Act concerning Support and Service for Persons with Certain Functional Impairments (LSS), which is an amendment to the Swedish Social Services Act. In Norway the municipalities grant approval based on need under the Norwegian Social Services Act. Not all municipalities have user-controlled personal assistance and there is no fixed amount for assistance that applies to all municipalities. User-controlled personal assistance has no age limit and is financed by the municipalities, though the state covers 80 percent of expenses exceeding about NOK 900,000/year. Some municipalities charge a fee for assistance hours that are considered to be housework/home help services if the user has a certain income. Another difference compared with Sweden is the scope, according to Jan Andersen. “Sweden has far more users and many more assistance providers.

How has the Swedish system influenced user-controlled personal assistance in Norway? “On the one hand, the Swedish scheme has been a source of inspiration, especially for users. The legislation debate in Norway is largely inspired by the Swedish system. On the other hand, the Norwegian regulatory authorities are frightened by the rising costs in Sweden.”

How has the lack of an age limit affected user-controlled personal assistance?“There are not many personal assistance users over the age of 65. There is no tradition among older people to apply and few are aware of it.”

Legislation only for those with many user-controlled personal assistance hours

Strengthening the rights of those who receive user-controlled personal assistance has been discussed for some time. Local authorities would have to grant user-controlled personal assistance to those individuals who are entitled to it and who have the right to choose the employer format. There is a proposal under discussion in the Norwegian Storting (Parliament), but it is not clear when a decision will be taken. There is resistance to legislation, according to Jan Andersen. “There are two main arguments against it: concern that it will mean a significant increase in costs, and skepticism toward having separate legislation in an act without general legislation.”

What is the proposal under discussion right now? “Under the proposal in the Storting, those who are granted more than 20 hours/week will have user-controlled personal assistance as a right. It would mean that those who have fewer than 20 hours would not have a stronger right, which would be bad for that group,” said Jan Andersen. “It may become more difficult for the group to get assistance, user-controlled personal assistance could then be limited to those who need assistance more than 20 hours ppporter week.”

Disagreement over costs of legislation

If legislation passes, the municipalities still have to pay. However, the state still covers 80% of expenses exceeding NOK 900,000/year for particularly resource-intensive users. Minister of Health Anne-Grete Hjelle Strøm-Erichsen has opposed legislation and has said that it would cost NOK 18 billion, while a group in the Storting estimates NOK 1 to 2 billion; I ask Bente Skansgård about the large discrepancy between these estimates. “In Norway, we usually say ‘think of a number’. The municipalities have a tendency to give personal assistance users more hours than they received in traditional in-home support services. Doing so increases the costs, and there is uncertainty whether this trend will continue, or if the municipalities will be stricter for new personal assistance users so that they do not receive more hours than they had previously under the in-home support services.

The second uncertainty is the number of new users, according to Jan Andersen. He believes that the figures vary so greatly because they start from extreme scenarios. “If you assume that the municipalities will grant many more hours and that many people over age 65 will apply, you get a higher number. However, if you think that the municipalities will apply stricter guidelines and not so many people will apply, you get a lower number.”

Fewer and fewer have both in-home support services and personal assistance services

About 260,000 people, including people over the age of 65, receive care services in Norway; about one percent of them have user-controlled personal assistance, which also includes home health care and home help services. The report Stability and change - Development of user-controlled personal assistance (page 20) shows that in 2010, three of five personal assistance users only had user-controlled personal assistance, while the rest also had other assistance, primarily home health care and care subsidy/relief for family members who provide care. A few also had in-home support services, but the percentage that has both user-controlled personal assistance and in-home support services is declining, according to Jan Andersen. “It could be because more personal assistance users who need fewer hours have received the benefit, and because more users have become more secure in the role of assistance recipient and want all their support in the form of user-controlled personal assistance.”

Are there any studies that show that user-controlled personal assistance hours are less expensive than home help services?“No major studies have been carried out, but a report that ULOBA ordered from research company Econ shows that assistance is less expensive. It depends on how the municipalities calculate costs, but nothing suggests that an assistance hour would be more expensive for the municipality than regular in-home support services."

How large a percentage of assistants are users’ family members?“Currently only a few and it is not discussed much; many family members who provide care still receive compensation in the form of care subsidy and relief. However, the situation may change as more and more people who are unable to be supervisors personally may receive user-controlled personal assistance, such as children.”

What is the limit for the tasks an assistant can do?“You decide that together with the assistants. The municipalities usually do not like to get involved in the decision as long as the users are satisfied. In 2000 we also conducted a survey among assistants and asked if they experienced any unpleasant situations in their work. Very few assistants experienced unpleasant situations and the results were better than among municipal in-home support services personnel.”

More reliable supervisors at the same time that more people are unable to accept the leadership role

The study Stability and change - Development of user-controlled personal assistance 38) includes three categories with which interviewed users were to identify. “Ideologues” consider themselves to be experts regarding their own lives and that assistance must be performed in the most flexible way for the user. “Traditionalists” believe that assistance should be designed in collaboration with the assistant, and “rehabilitationists”, who feel that personal assistance should be properly carried out. Jan Andersen says that between 2002 and 2010 the ideologues increased from 59 to 62%, the traditionalists decreased from 37% to 30% and the rehabilitationists increased from 4% to 8%. “We interpret this as a growing majority of ideologues becoming more secure in their role as supervisor, at the same time that there is a growing percentage of rehabilitationists who are unable to function as supervisor. The expansion in 2006 to individuals who are not supervisors themselves can be viewed as a democratization, though at the same time leading to a dilution of the supervisor aspect of user-controlled personal assistance.”

Changing assistance market

The municipalities and the user cooperative, ULOBA, dominate the assistance market in Norway. In all, 54% have the municipality as employer, which is a decline of 11% from 2002. ULOBA has constantly strengthened its position at the expense of the municipalities and has about 33%. The percentage that acts as employers for their assistants remains stable at about 10%. Private companies have begun to enter the market, but so far hold only about a 2% share with companies such as Dialogue, Adecco, Jag assistanse, Bpa drift and Optimalassistanse. Jan Andersen believes that the trend for ULOBA to increase its market share will continue, but that the competition is growing. “Companies may come that specialize in specific groups, such as JAG, which has established itself in Norway and specializes in people who cannot be supervisors. Companies that today primarily provide in-home support services will probably want to expand their offering to user-controlled personal assistance.”

How do you think that a larger percentage of private companies would affect user-controlled personal assistance? “Hard to say, user-controlled personal assistance may vary at different providers. There is also a risk that private companies that provide traditional in-home support services might make user-controlled personal assistance more like in-home support services.”Are for-profit private assistance companies under discussion?“No, not yet, the scale is so small.”

Municipal contracts to reduce costs

Assistance is regulated under the Norwegian Social Services Act 4-2 and 8-4, which states that the municipality must offer user-controlled personal assistance as part of its social services. Municipalities can now decide who is allowed to employ the assistants. Contracts have become increasingly common in which companies submit bids and win contracts to be the BPA employer in the municipality. “We see that some municipalities are trying to exercise stronger control. The trend has been particularly evident in the municipalities in the central Østland region, where municipalities have preferred to have more control over the agreements with providers.”Can the municipal contracts threaten freedom of choice?“It can definitely influence freedom of choice.” If municipalities want to have approved providers, they should make sure that there are many from which to choose.How is ULOBA affected by the ongoing changes in the market?“It notices the beginnings of competition from private companies, but mainly that municipalities want stronger control over costs. When the 14 Vestregionen municipalities issued a call for tender, ULOBA was not chosen as a provider, since it boycotted the procurement process. ULOBA felt that the call for tender violated important principles of user-controlled personal assistance, since the municipality limits freedom of choice to a specific number of employers. Now ULOBA is encouraging its members to become employers of their assistants and to purchase services from ULOBA. “If this should spread, ULOBA’s position would decline, while private employers and users serving as employers would increase instead, but I don’t think that will happen,” says Jan Andersen.